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History of AIDS: 1987-1992

Silence=Mort badges produced by ACT-UP, 1989

These are some of the most important events that occurred in the history of AIDS over the period 1987-1992.

1987 History

At the beginning of January the UK Secretary of State for Social Services, Norman Fowler, visited San Francisco, and in a widely publicised visit shook hands with an AIDS patient. It was suggested that Princess Diana should follow his example, which she did later in the year. 1 2

A leaflet about AIDS was delivered to every household in the UK, and the British Government also launched a major advertising campaign with the slogan "AIDS: Don't Die of Ignorance", and with the secondary advice: 3 4

"Anyone can get it, gay or straight, male or female. Already 30,000 people are infected." 5

In February there was a general media "AIDS week", which included numerous TV and radio programmes about AIDS in the UK. 6 By this time, the World Health Organisation had been notified of 43,880 cases of AIDS in 91 countries. 7

The first HIV case was officially recorded in the Soviet Union, and a massive HIV testing programme was conducted. 8

Meanwhile in San Francisco, gay rights activist Cleve Jones made the first panel for the AIDS Memorial Quilt in memory of his friend Marvin Feldman. 9

"The Names project is a campaign to provide memorials to those lives by creating a huge quilt made up of individual panels, each 3 by 6 feet, that have been made by families friends and co-workers of those who died. Each of the nearly 3000 panels, which have come from all over the country, bears the name of a victim of acquired immune deficiency." 10

In March the U.S. Food and Drug Administration (FDA) approved AZT as the first antiretroviral drug to be used as a treatment for AIDS. 11

Around the same time the organisation ACT UP (the AIDS Coalition to Unleash Power) was founded. ACT UP was committed to direct action to end the AIDS crisis, and their demands included better access to drugs as well as cheaper prices, public education about AIDS and the prohibition of AIDS-related discrimination. On 24th March they held their first mass demonstration on Wall Street. 12

Many of the placards used in ACT-UP's demonstrations carried the graphic emblem "SILENCE=DEATH". Created in 1987 by a group of gay men calling themselves the Silence=Death project, the emblem was leant to ACT-UP and for many Americans it became the symbol of AIDS activism. 13

One ACT-UP committee used the emblem in a window display called "Let the Record Show" at the New Museum of Contemporary Art in New York; afterwards they regrouped as Gran Fury: 14

"a band of individuals united in anger and dedicated to exploiting the power of art to end the AIDS crisis" 15

Over the next few years Gran Fury produced many high profile public projects including the art banner announcing "Kissing doesn't kill: Greed and indifference do" 16 and the poster "AIDS: 1 in 61" about babies born HIV positive in New York City. 17

In Australia, the Grim Reaper education campaign was launched, with television images of 'death' knocking down people in a bowling alley. Although widely criticised at the time, the advertisements succeeded in ensuring widespread discussion of AIDS. 18

"A bowling alley of death, haunted by decomposing grim reaper bowling over men, pregnant women, babies and crying children was featured on national television last night as the part of a $3 million AIDS education campaign, The 60-second commercial featuring the grim reaper, a macabre and dramatic rotten corpse with scythe in one hand and bowling ball in the other, is spearheading efforts by the National Advisory Committee on AIDS to educate Australians about the incurable disease." 19

On 31st March, at a ceremony at the White House attended by President Reagan, it was announced that an agreement had been reached regarding ownership of the HIV antibody test patent. The Pasteur Institute agreed that it would end its legal challenge, and would share the profits from the test with the U.S. Department of Health and Human Services. 20 Although the agreement officially resolved the question of who had invented the HIV antibody test, it did not address the question of who had discovered HIV and identified it as the cause of AIDS. It was generally agreed that:

"historians can decide who found the AIDS virus first." - Newsweek 21

But to many people it appears clear that HIV was isolated in Paris a year before it was isolated in the USA. 22

The following day President Reagan made his first major speech on AIDS, when he addressed the Philadelphia College of Physicians. Reagan advocated a modest federal role in AIDS education, having told reporters the previous day that he favoured teaching pupils about AIDS,

"as long as they teach that one of the answers to it is abstinence - if you say it's not how you do it, but that you don't do it." 23

In England the first specialist AIDS hospital ward was opened by Princess Diana. The fact that she did not wear gloves when shaking hands with people with AIDS was widely reported in the press.

"she shook my hand without her gloves on. That proves you can't get AIDS from normal social contact." 24

The WHO Global Programme on AIDS developed a Global AIDS Strategy, which was approved by the World Health Assembly in May. The Global AIDS Strategy established the objectives and principles of local, national and international action to prevent and control HIV/AIDS. It included the need for every country to have a "supportive and non-discriminatory social environment". 25

But on 31st May President Reagan gave a speech about AIDS at a dinner of the American Foundation for AIDS Research and particularly focused on increasing routine and compulsory AIDS testing. 26

The following day Vice President George Bush opened the 3rd International Conference on AIDS in Washington and was booed by the audience when he defended President Reagan's HIV testing proposals. Demonstrators against the administration's policies were arrested outside the White House by police wearing long yellow rubber gloves. 27

"On the nightly news broadcasts, the world saw pictures of demonstrators being arrested by police wearing bright yellow, arm-length gloves. Although research had by now proved that the AIDS virus could not be passed through casual contact, the sight of the gloves served to reinforce the public's general overestimation of the risk of HIV transmission." 28

Gran Fury HIV posterIn June the U.S. Public Health Service added AIDS to its list of diseases for which people on public health grounds could be excluded from the USA. 29 Subsequently in July the "Helms amendment" created by Senator Jesse Helms added HIV infection to the exclusion list. 30 Few foresaw the implications of the addition and it went virtually unnoticed. 31

In July the WHO reviewed the evidence and confirmed that HIV could be passed from mother to child through breastfeeding. Nevertheless they recommended that HIV positive mothers in developing countries should be encouraged to breastfeed, as in many circumstances safe and effective use of alternatives was impossible. 32

In light of more widespread HIV testing, the CDC revised their definition of AIDS to place a greater emphasis on HIV infection status. 33

Prejudice against people with HIV continued in America. The Ray family, who lived in Arcadia, Florida, had three sons, each of whom was a haemophiliac and HIV positive. During 1986 the family was told their sons could not attend school. In 1987 the family moved to Alabama, and once again they were refused entry to school. Threats against the family grew louder and more frequent, and on August 28th the Rays' small single-storey house was doused with gasoline and torched. 34

In England, the UK Government expanded syringe exchange schemes to prevent transmission of HIV through drug use, and also launched an advertising campaign with the message 'Don't inject AIDS'. 35

In the autumn, a book by Randy Shilts called 'And the Band Played On' was published, which chronicled the early years of the AIDS epidemic. 36 Shilts' book made an important contribution to documenting the history of AIDS, but his view of "the facts about AIDS", as well as his opinions, differ greatly from others on a number of occasions. 37

Shilts was the first to identify a French-Canadian flight attendant called Gaetan Dugas as 'Patient Zero'. (See the History of AIDS up to 1986 for an introduction to 'Patient Zero'). Shilts claimed that Gaetan Dugas played a key role in the early spread of AIDS in America, and the story of 'Patient Zero' was widely publicised by the media. 38 But the claim has since been widely disputed:

"There's no Patient Zero. It's lots and lots of people moving around from New York to San Francisco, and the rest of the world. If there ever was an original Patient Zero, it would have been back in the mid-Seventies. But there isn't an original Patient Zero." - Andrew Moss 39

In Africa, President Kaunda of Zambia announced that his son had died of AIDS, and appealed to the international community to treat AIDS as a worldwide problem. 40 In Uganda, 16 volunteers who had been personally affected by HIV/AIDS came together to found the community organisation TASO. 41

In October, AIDS became the first disease ever debated on the floor of the United Nations (UN) General Assembly. The General Assembly resolved to mobilize the entire UN system in the worldwide struggle against AIDS, under the leadership of the WHO. 42

The American scientist Dr. Peter Duesberg published a scientific paper in a cancer journal that questioned the then dominant theory that viruses were involved in cancer causation, and also queried the link between HIV and AIDS. 43 In November, Channel 4 broadcast the documentary 'AIDS: the Unheard Voices' to its British audience. In the documentary Duesberg and others argued that HIV could not be the cause of AIDS. 44

By December, 71,751 cases of AIDS had been reported to the World Health Organisation, with the greatest number reported by the USA (47,022). Countries reporting over 2,000 cases included France (2,523), Uganda (2,369) and Brazil (2,102). Five other countries reported more than 1,000 cases: Tanzania (1,608), Germany (1,486), Canada (1,334), UK (1,170) and Italy (1,104). 45

The WHO also reported that an estimated 5 to 10 million people were infected with HIV worldwide, with 150,000 cases of AIDS expected to develop in the following 12 months and up to 3 million within the next 5 years. 46

1988 History

As the global mobilisation against AIDS continued, a world summit of ministers of health was held in London to discuss a common AIDS strategy. The summit focused on programmes for AIDS prevention. Delegates from 148 countries attended.

One outcome of the meeting was the London Declaration on AIDS Prevention, which emphasised education, the free exchange of information and experience, and the need to protect human rights and dignity. 47 The Director-General of the World Health Organization chose this occasion to announce that the WHO intended to promote an annual World AIDS Day, and the first such day would be on 1st December 1988. 48

Gran Fury 'All people with AIDS are innocent' posterThe meeting was opened by the UK's Princess Royal, who upset many people involved in AIDS education, as well as many people with AIDS, when she stated that:

"the real tragedy concerns the innocent victims, people who have been infected unknowingly, perhaps as a result of a blood transfusion … but possibly, worst of all, those babies who are infected in the womb and are born with the virus." 49

If there are "innocent victims", then by implication there are also "guilty victims". This was an unfortunate suggestion to be making at a world meeting on AIDS prevention.

In May the United States finally launched a coordinated HIV/AIDS education campaign. 50 The distribution took place of 107 million copies of "Understanding AIDS", a booklet by Surgeon General C. Everett Koop. 51 'Understanding AIDS' was the single most widely read publication in the United States in June 1988, with 86.9 million readers. 52

The following month the American Medical Association urged doctors to break confidentiality in order to warn the sexual partners of people being treated for AIDS. 53

"We are saying for the first time that, because of the danger to the public health and danger to unknowing partners who may be contaminated with this lethal disease, the physician may be required to violate patient confidentiality. The physician has a responsibility to inform the spouse or known partners. This is more than an option. This is an professional responsibility."

In the USA frustration continued to grow over the slow progress in improving access to drugs. When the Presidential Commission on the HIV Epidemic issued its final report in June 1988, it declared that the FDA arrangements were "not meeting the needs of people with AIDS". On October 11th more than 1,000 ACT-UP demonstrators virtually shut down operations at the FDA headquarters. 54

Eight days after the ACT-UP demonstration the FDA announced new regulations to speed drug approval. 55

The first official needle exchange was started in the US to prevent transmission of HIV through drug use. 56 A limited experiment started in November in New York City and, at about the same time, the Prevention Point opened in San Francisco. 57 58 But Congress prohibited the use of federal funds to support needle exchange programmes. 59

On December 1st, the first World AIDS Day took place, with the WHO asking everyone to "Join the Worldwide Effort." 60

1989 History

On February 7th, the FDA announced that it was going to approve an aerosol form of the drug Pentamidine for the treatment of PCP (a type of pneumonia) in people with AIDS. 61 Much of the data that led to this approval was collected by CCC, County Community Consortium of San Francisco, with further data collected by another community research organisation called CRI, Community Research Initiative of New York. 62

By March 1st, 145 countries had reported 142,000 cases of AIDS to the World Health Organisation (WHO). The WHO regarded this as under-reporting, and estimated the actual number of people with AIDS around the world to be over 400,000. It was predicted that this figure would rise to 1.1 million by 1991. It was also estimated that 5-10 million people were already infected with HIV. 63

On April 2nd, Hans Verhoef, a Dutch man with AIDS, was jailed in Minnesota under the federal law banning travellers with HIV from entering the USA. 64 In June a protest against the law took place at the opening ceremony of the Fifth International Conference on AIDS in Montreal, when 250 protesters with placards stormed the stage. 65

In August, there were more developments with respect to treatment, when the results were announced of a major drug trial known as ACTG019. ACTG019 was a trial of the drug AZT, and it showed that AZT could slow progression to AIDS in HIV positive individuals with no symptoms at all. The findings were considered extremely exciting. On August 17th a press conference was held, at which the Health Secretary, Louis Sullivan said:

"Today we are witnessing a turning point in the battle to change AIDS from a fatal disease to a treatable one." 66

The result had enormous financial implications for the makers of the drug, Burroughs Wellcome. The day after the press conference, the value of the company's stock rose by 32 per cent. 67 The high price of AZT angered many people; with a year's supply for one person costing about $7,000, Burroughs Welcome were accused of "price gouging and profiteering". 68 69

In September, the cost of the drug was cut by 20 percent. 70

In October the second drug for the treatment of AIDS, dideoxyinosine (ddI), was made available to people with AIDS, even though only preliminary tests had been completed.

"It become clear that ddl was not just another drug in terms of need: it was a life-and-death matter, said Richard L. Gelb, chairman of Bristol Myers." 71

1990 History

At the beginning of the year, it was reported that a large number of children in Romanian hospitals and orphanages had become infected with HIV as a result of multiple blood transfusions and the reuse of needles. Jonathan Mann, the head of the WHO's Global programme on AIDS, noted that 'Eastern Europe is the new frontier for the AIDS epidemic'. 72

In China, 146 people in Yunnan Province near the Burmese border were found to be infected with HIV due to sharing needles. This shocked public health officials in China. It was not known whether this was the first sign of an epidemic or an isolated outbreak. 73

In New York city the needle exchange scheme was closed down. 74

Jonathan Mann resigned as the head of the WHO AIDS programme, in protest of the failure of the UN and governments worldwide to respond adequately to the exploding pandemic, and against the actions of the then WHO director-general Dr. Hiroshi Nakajima. 75 During Jonathan Mann's leadership, the AIDS programme became the Ryan White (1971-1990) with his motherlargest single programme in the organisation's history. 76 But more importantly:

"Jonathan's persistence and passion helped wake up the world." 77

and,

"Had it not been for Jonathan's unique contributions, the world's approach to AIDS might very well have gone towards mandatory testing and quarantine." 78

On April 8th Ryan White died in the United States. He was a haemophiliac infected with HIV through blood products. He had become well known a few years earlier as a result of his fight to be allowed to attend public school. 79 Just a few months later the Ryan White CARE Act was passed by Congress. The aim of the act was to provide grants to improve the quality and availability of care for individuals and families with HIV. 80

In the UK and the US, discussion grew about whether there would ever be a heterosexual epidemic because of the difficulty of female-to-male transmission of HIV. 81 82 83

In June, a TV programme called 'The AIDS Catch' was screened in the UK, again questioning whether HIV caused AIDS and whether AIDS was infectious. The programme provoked a hostile response among the AIDS community and AIDS-related organisations. 84 Some people felt that the programme was sensationalist and contained factual inaccuracies. It was also felt the programme caused significant distress among people with HIV and undermined the efforts carried out in the field of HIV/AIDS prevention. 85

Protests against the ban on HIV positive people entering America continued. Although there had been minor changes to the law, at the time of the 6th International Conference on AIDS in San Francisco in June it was still considered by many to be "discriminatory and medically unsupportable". 86 Consequently there was a widespread boycott of the conference, and many people who spoke at the conference took the opportunity to voice their views. One such person was June Osborn, the Chair of the National Commission on AIDS, who said:

"How sorry I am, and how embarrassed as an American, that our country whose tradition serves as a proud beacon for emerging democracies, should persist in such misguided and irrational current policy." 87

Many demonstrations took place during the conference week, the most significant being "A United Call to Action", in which activists, scientists, and many others marched together to emphasise the importance of unified action to end AIDS. 88

The International AIDS Society (IAS) announced that no further IAS sponsored conference would be held in a country that restricted the entry of HIV infected travellers. 89

ACT-UP protestors at the AIDS conference in San FranciscoIn July the CDC reported the possible transmission of HIV to a patient during a dental procedure. The dentist had been diagnosed with AIDS three months before performing the procedure. The CDC investigation did not identify any other risk factors or behaviours that could have put the patient at risk of HIV infection. 90 A couple of months later the patient was named as 22-year old Kimberly Bergalis and the dentist was named as David Acer. 91

"When she was diagnosed with AIDS we were in disbelief. All we could wonder was whether something went wrong at the dentists. Health officials said no way, it just can't happen. But Kimberly stuck by her guns and kept telling them to look at the dentist. Eventually the CDC supported her conclusion." - George Bergalis 92

In the UK, Prime Minister John Major announced that the Government would pay £42 million compensation to haemophiliacs infected with HIV and their dependants. 93

By the end of the year, over 307,000 AIDS cases had been officially reported to the WHO, but the actual number was estimated to be closer to a million. It was estimated that 8-10 million people were living with HIV worldwide, of whom about 5 million were men and 3 million were women. 94

AreaEstimated HIVReported AIDSEstimated AIDS
Africa>5,500,00077,043>650,000
N America1,000,000156,658200,000
S America1,000,00028,93790,000
Asia500,0008432,000
Europe500,00041,56450,000
Oceania30,0002,3342,700
Total<9,000,000307,379<1,000,000

The 3 million HIV-infected women were estimated to have collectively given birth to around 3 million infants, of whom over 700,000 were likely to have become infected with HIV. 95

1991 History

At the beginning of 1991 the CDC published a report confirming that, in addition to Kimberly Bergalis, two other patients had probably been infected by the same dentist. 96 Such was the public concern that America's leading medical and dental associations announced that HIV positive doctors and dentists should warn their patients about their infection status or give up surgery. 97 During the summer, in the midst of continuing public hysteria, the CDC also recommended that infected health care workers should be barred from certain procedures. 98 99

The largest peak in requests for HIV testing in the UK was observed in January 1991 when the character Mark Fowler, in the BBC television series EastEnders, was diagnosed with HIV. 100

In the autumn, in a dramatic move, Kimberly Bergalis testified to the US Congress. In what she called her "dying wish", she asked members of congress to enact legislation for mandatory HIV testing of health care workers, to ensure that: 101

"others don't have to go through the hell that I have."

But, overwhelmed by opposition from the medical profession, the CDC chose not to recommend mandatory testing, and dropped its plans to list procedures that should not be carried out by HIV positive health workers. Kimberly Bergalis died a few days later. 102 103

During the summer, a third antiretroviral drug dideoxycytidine (ddC) was authorised by the FDA for use by patients intolerant of AZT. 104

Also during the summer, a study was published showing that HIV was transmitted much more easily through breast milk than had previously been thought. 105 But despite admitting that the news was discouraging, WHO also said that women in developing countries should continue to breastfeed, as the threat to infant health from contaminated water was even greater than the threat from AIDS. 106

The decision was taken to hold the 1992 international AIDS conference in Amsterdam, rather than its planned location in Boston, following the American administration's decision not to lift entry restrictions on HIV-infected travellers. 107

In the USA Earvin (Magic) Johnson announced that he had tested HIV positive and was therefore retiring from professional basketball, on the advice of his doctors.

He said that he planned to use his celebrity status to help educate young people about the disease. He also said:

"I think sometimes we think, well, only gay people can get it - it is not going to happen to me. And here I am saying that it happen to anyone, even me Magic Johnson." 108

A couple of weeks later in the UK, Freddie Mercury, lead singer of the rock group Queen, confirmed that he had AIDS. Just one day later it was announced that he had died. 109

In France, haemophiliacs who had become infected with HIV through blood products sued leading medical and government officials. They accused the blood transfusion centres of allowing the use of HIV-contaminated blood, even though tests to screen blood for HIV and techniques to destroy the virus in blood products were available. 110 111

The red ribbon became an international symbol of AIDS awareness during 1991. The organisation, Visual AIDS in New York, together with Broadway Cares and Equity Fights AIDS, established the wearing of a red ribbon as a way of signifying support for people living with HIV/AIDS. 112

As the end of 1991, about 450,000 AIDS cases had been reported to the Global Programme on AIDS (GPA) / World Health Organisation (WHO). It was estimated that 5-7 million men and 3-5 million women had been infected with HIV. Of these 9-11 million HIV-infected adults, nearly 1.5 million were estimated to have progressed to AIDS. 113

1992 History

The WHO set as a priority target for prevention that, by the year 2000, the whole population at risk from HIV and AIDS in Africa and Asia should live in communities where condoms were both readily available and affordable. 114

In the UK, the Department of Health made it an offence to sell, advertise or supply HIV antibody testing kits to the public. 115

During 1992, a major UK newspaper ran a series of articles challenging the orthodox view that HIV alone causes AIDS. 116

"But suppose the researchers are looking in the wrong place. Suppose HIV doesn't equal AIDS. Then we will have witnessed the biggest medical and scientific blunder this century." - The Sunday Times journalist Neville Hodgkinson 117

Many other British newspapers joined the heated debate with journalists, researchers, activists and organisations expressing their opinions about the cause of AIDS. 118

"'But what if HIV does cause AIDS? What effect will such articles have on attempts to inform the public on safe sex, or on the people who are suffering from AIDS and taking anti-HIV drugs?" 119

Mary Fisher, an HIV-positive woman and member of the Republican party in the USA, rebuked her party’s negligence in the face of the growing HIV and AIDS epidemic through a speech that was broadcast nationally: 120

“We have killed each other with our ignorance, our prejudice, and our silence. We may take refuge in our stereotypes, but we cannot hide there long, because HIV asks only one thing of those it attacks. Are you human? ” - Mary Fisher 121

Her address has since been considered one of the most significant American speeches of the twentieth century. 122

Tennis star Arthur Ashe announced he had become infected with HIV as a result of a blood transfusion in 1983. 123

Fearful that it was discouraging tourists, a new government in Thailand threatened to scale down the country's extensive AIDS awareness campaign, which had begun in 1991 and won international acclaim. However, the government lost power within weeks and the campaign was restored. 124

The FDA approved the use of ddC in combination with AZT for adult patients with advanced HIV infection who were continuing to show signs of clinical or immunological deterioration. This was the first successful use of combination drug therapy for the treatment of AIDS. 125

"This new drug is not a cure, said James Mason, M.D., assistant secretary for health and head of the Public Health service, but it constitutes an important addition to the expanding group of antiviral drugs currently available, including AZT and DDI, for treating people with AIDS."

The CDC, under pressure from patients and doctors, decided to revise its definition of AIDS. The previous list of illnesses that defined AIDS had been criticised for some time because it did not include many of the conditions most often seen in HIV positive women and injecting drug users. The new definition would take effect from the start of 1993. 126 127

The VIII International Conference was successfully held in Amsterdam rather than in its originally planned venue in Boston. 128

In France four health care officials were brought to trial accused of allowing the distribution, between 1980 and 1985, of blood products known to be contaminated with HIV. 129 130 The former director of the transfusion service, Michel Garretta, was sentenced to four years in prison, as was Jean-Pierre Allain, the former head of research at the transfusion centre. The third doctor, Jacques Roux, was given a four-year suspended sentence, whilst the fourth doctor was acquitted. 131

In response to rising HIV prevalence, the Indian government decided to allocate $100 million to the National AIDS Control project over the next five years, which amounted to more than 15 percent of the national health budget. Most of this money would come from a World Bank loan. 132 Experts predicted that within five years there might be more people affected by AIDS in India than in any other country. 133

References

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